InterConnect Support Public Blog

      2011 Annual Conference     Every summer, the AIS-DSD Support Group hosts a conference in a different North American city.  It brings together women and children affected by DSDs and their spouses, partners and families for an unforgettable few days of support, education, and fun. The 2011 conference will be held July 7-10 in Seattle, Washington.  If you are not currently a member of the AIS-DSD Support Group or email circle, please contact us to learn more about how you can attend. You can also get a brief look at this year's agenda:  Download in PDF or Word format. The conference fee is $250 per person. This includes meals on Friday and Saturday, and breakfast on Sunday. There will be three days of programming designed specifically for affected adults, young adults, teens, parents and partners. Hotel accommodations are also available separately at a great rate of $99 per room/per night. This rate expires June 13, so make your reservations s...

by ''Cindy'' I was born looking like other baby girls, and my intersexuality was not uncovered until age 17, when I visited a doctor since I did not menstruate. My doctor discovered I had male gonads and XY chromosomes, but — following standard medical practice in the 1970’s — lied to me about what they had found.  They simply told me I couldn't have children due to a "birth defect", but there was nothing to worry about, as I was a completely normal female.    I did not learn the full truth and the significant health risks of my syndrome until age 34 in the early 1990’s. I have the complete form of Androgen Insensitivity Syndrome.   Standard medical protocols today urge individuals with AIS to have our undescended testicles removed in our early 20's to prevent testicular cancer at mid-life.  Had I not become inquisitive on my own at age 34 about my medical needs, I might have developed cancer and died very prematurely – no thanks to these doctors. I ha...

     by Marissa Jaye     It has been almost three months since we gathered in Chicago.  I feel nostalgic just thinking back on our weekend together.  I realize that it passes so quickly and that we all crave more.  The newsletter is one of many resources that we have available to help us keep in contact.  Thank you to Nancy and to all who have contributed. Any one of us who has attended one of our annual conferences realizes that it takes a tribe to create a meeting.  I want to give a special thanks to Tryla who truly went above and beyond to make this year’s conference a success.  I also want to thank our exiting board and current board for the many hours dedicated to our gathering.  I think you will all agree that our meetings are priceless and it is because of these women that things went off as well as they did.  My deep gratitude goes out to each of you. I think we all can agree that the biggest impact of the weekend ...

    by Ann of Michigan       Enlightening, Encouraging, Engaging, Empowering …but most importantly, Embracing 46 XY would be the five words that I find to be most definitive about my very first International AISSG Conference. Within one week of being introduced to sweet Jeanne Nollman by email, I as excitedly in route to meet her in person in Chicago as well to meet others like myself for the very first time.  We had no spare money for me to go (especially at the last minute), but all I knew was that I had to go, and my husband really wanted me to!  This was one of those “all hell couldn’t hold me back” moments!! Suffering a lifetime of trying to understand the frustrating dynamics of my own body, I was now on the yellow brick road to self discovery. Like the zany trio characters of the Wizard of Oz I was no longer satisfied with the imprisonment of my shame.  I was now pressing into the hope of getting a new heart, a new brain…to get courage!...

    by Rebecca Baughman Kerns     Please join me in welcoming the 2008/2009 AISSG-USA Directors and Officers! Marissa Jaye will be taking over as president, a big job to be certain, but I have no doubt that she will do it incredibly well.  I am always so happy to see an email from our amazing Marissa.  I know it is full of heart, love and conviction. Tryla Brown will be serving as Secretary.  I am always amazed at Tryla's drive and determination.  She is a force, all 5 foot 2 of her!  I am so happy to see her continue serving AISSG as she has done for so many years. Aimee Owens will be joining the Board; a beautiful and happy thing is always said by Aimee.  She is a wonder and a joy. Cynthia Johnson will also be on the Board; a vivacious, vigorous and verbose welcome to one of my favorite ladies. And Carolina Johnson rounds out our new members.  Carolina warmed my heart the first time I saw her face.  I am so excited to s...

     by Katie Baratz     Forget my first kiss, my college grad, and my acceptance letters to medical school.  I can (roughly) pinpoint my most exciting moment to 4:03 PM, EST, on Friday, September 21, 2007, the moment my mother and I appeared before millions of viewers on the Oprah Winfrey Show. Everything up until that point was a blur: the pre-show interviews, filming the lead-in montage in my West Philly apartment, getting picked up at the airport in a stretch limo, making a mess in the dressing room (only to be told I was no worse than Paris Hilton had been), even sitting with Oprah on the soundstage and answering her questions.  It wasn't until I was sitting in a living room with 20 newly-minted med school friends watching myself on TV that the enormity of my choice sank in, that the girl standing before America and declaring that she had a Y chromosome and undescended testes was me. Only part of the exhilaration of those 10 minutes of air time c...

  by Joyce Henning       When I received the meeting info in the mail last year, I had serious doubts I’d be able to attend.  Summer is quite busy (I know everyone can relate), and weekends were booked tighter than a Denver airport hotel in a blizzard.  But, having missed the past two meetings, I knew I had to clear the calendar and head to North Carolina. Nothing beats the face-to-face contact of an annual meeting.  It’s a huge benefit to be part of the email circle, getting to know orchid sisters and sharing life’s experiences.  However, there’s a special spark to attending a meeting. Catching up with old friends and meeting new members is like a homecoming.  There seems to be enough time to catch up with everyone, but the opportunity to be immersed in a weekend of informational sessions, social hours and dinners is invaluable.  Plus, the southern charm from our beautiful Orchid Sister Nancy made everyone feel at home.  When you ...

     by Rebecca Baughman     First, I want to thank everyone who made the trip to Indiana this year.  What a wonderful and invigorating time we had!  The presence of so many first time visitors was a sight to behold. While in Indiana, the board of directors of the Androgen Insensitivity Support Group – USA held our annual general meeting, both as a board meeting and a public hearing for those interested in participating. The decision was made to hold next year’s meeting in North Carolina (July 20-22, 2007), spearheaded by our dear Nancy Evans.  The meeting was dubbed “Sweet Tea & Grits,” and promises to be an exciting time.  The decision was made to continue with the three day format, a great way to make certain that we had an adequate amount of time to stuff a year’s worth of fun into three days!  I am looking forward to a brilliant time and hope you are as well. The Board also voted on the inclusion of the terminology of “disorder...

  by Cindy Stone     On a warm summer weekend, nearly 100 of us rare orchids -- adults, dozens of parents and teens -- gathered in Indiana to give and gain support from each other.  We laughed at funny talents, hugged new friends, ate good Hoosier cookin’ and cried our way through many boxes of Kleenex.  Most of us spent some four days or more on the IU campus with equal times inside and outside the classroom learning more about ourselves and each other.  The evaluations would later say it was a magical weekend … "a weekend we would remember all our lives." For the board and planning committee, the weeks leading up to the 10th anniversary 2006 AISSG-USA National Meeting in Bloomington, were filled with anticipation.  Would enough folks come for three full days of presentations?  Would parents and teens enjoy their new programming?  Our anxiety was for naught because the meeting came off just great, and the orchids were blooming in Bloomington...

    by Tryla Brown     Most times, the sensationalism of using AIS or a similar condition as a plot device on TV does not bother me.  I have a sense of humor and can take a joke just as well as the next person and I have no problem laughing at myself. Yes, I know that Dr. House was just being his obnoxious self.  I simply don’t buy it.  His demeanor with his 15 year old patient with CAIS was tacky, cruel, cold and ugly.  Rather than feeling embarrassed or ashamed, it just plain and simple made me angry.    Tryla Brown        

  Ways to let go of unhealthy feelings About your AIS status     Editor's note: ... This article was adapted from several other non-profit sources. As women with AIS and similar conditions, there have probably been times when we have felt flawed, unworthy, inadequate, or somehow defective, and that we keep saying over and over again "what is wrong with me."  If you’re like me, after initial diagnosis, you may have had feelings of shame and/or remorse about your worth as a woman. Experts say shame often leads us to low self-esteem and it plays a major role in stifling “our best self.”  Shame is both a feeling or emotion, and an experience that happens to the total self. We all experience some shame.  But the years and years of carrying around shame from your diagnosis or anything else is harmful and can affect your emotional well-being. If we do not work through these feelings and work to let go of them, shame can accumulate and weigh us down, until we feel ...

    by Cindy Stone     Well, spring is nearly here, and it's a good time to ask you to "save the date" on your calendars for the 2006 AISSG-USA Annual meeting in Bloomington, Indiana. This year's meeting will be held on the scenic wooded campus of Indiana University (IU).  Visit www.iub.edu for a quick mini tour.  IU Bloomington is nearly 200 years old, and is the flagship campus of the IU statewide system of campuses.  We have nearly 40,000 students and they'll be mostly gone in the summer months, leaving us a beautiful campus to tour and visit. We have reserved really nice hotel rooms & quality meeting space for the dates of August 4, 5, & 6, 2006.  Meetings and rooms will be in the beautiful Indiana Memorial Union Hotel, www.imu.indiana.edu on our campus. Planning is already underway.  A volunteer planning committee has been formed and has had its first meeting.  It's comprised of Dr. Arlene Baratz (from the parent's group),...

      by Tryla Brown      I left my heart in San Francisco San Francisco is such a beautiful city.  Sightseeing was a blast!  The 2005 annual AISSG meeting was above and beyond all my expectations.  Jan did a superb job of organizing the event and making sure that everyone’s needs were meet (see photo below of host Jan with assistant Jane at the registration table with one of Jan’s many orchids).  The hotel was gorgeous and the food delicious and bountiful.  It was so good to see so many familiar and new faces.  There were a total of ten first-timers attending the meeting. One of the main reasons I attend these meeting is for the socializing.  Being around, hanging out, or just socializing with other AIS women is very therapeutic for me.  It is also very fulfilling for me to be there for others who are just finding out about their AIS.  Story sharing time is always a particularly emotional portion of the meeting ...

    by Cindy Stone       For many of us, the weeks leading up to the Tenth Annual AISSG-USA National Meeting in beautiful Palo Alto were filled with anticipation. I found myself humming the old chestnut: California here I come, right back where I started from. Where bowers of flowers bloom in the sun… etc. So open up them golden gates, California here I come. Well, we orchids did bloom in that sunshine from August 19-21, 2005 at the Sheraton Resort in northern California thanks to the incredible work of Jan Johnson. Jan had set the table very well for all of us to gather, share, learn, laugh and care for ourselves and each other.  The enormous amount of “woman-power” Jan personally gave to this organization is extraordinary.  We all owe her our gratitude for making the “10th annual meeting” such a huge success.  Thank you Jan! The meeting was attended by some 50 AIS adults, along with a few parents, teens and physicians. A welcome reception held p...

    by Orchid Press     “The man who can keep a secret may be wise, but he is not half as wise as the man with no secrets to keep.” Edgar Watson Howe (1853-1937) Mr. Howe most assuredly didn’t have the AIS woman in mind when he wrote the above quote.  Perhaps he would have modified it somewhat if he knew of the secrets kept by us all at some point in our lives.  Many of us grew up with family members that never spoke of AIS, treating it like a gorilla in the corner.  We know it’s there, but we’re not going to talk about it. Keeping the AIS secret for years through adolescence and early adulthood can cause feelings that you’re “not normal” or a “freak,” especially if no one in your family tells you otherwise or takes the time to explain what AIS is all about.  And, for many of us, our doctors kept us in the dark as well, withholding the truth or shying away from explaining the medical aspects of AIS; thus, another layer of secrecy.  In some in...

    by Orchid Press     Thanks to everyone for completing the annual questionnaire last fall.  In the questionnaire, there was a request for newsletter topics, and one of the suggestions was a discussion of the positive aspects of AIS.  At the 2004 Annual Meeting in Madison, attendees were asked a series of questions about their AIS experiences and one of those questions just happened to be "tell us something that you like about having AIS."  A small sampling of the responses follows: Great skin, no periods! (A very popular response!) Supportive friends. I like being unique and special. A slightly more developed sympathy for people marginalized by society. Being a super-woman. Helping others who in turn help me. Being loved and accepted by my spouse, just the way I am. I have learned a lot about human development and genetics. So, if you find yourself experiencing self doubt or inadequacy, just remember what makes you special and unique.  Perhaps ...

      by Orchid Press     Many AIS women feel the pull towards motherhood, but when it comes time to begin the adoption process numerous questions come to mind.  Where do I begin my search?  What does the adoption process involve?  Are there local adoption agencies that I can turn to? The first step you may want to consider is to search your state’s government website under the “health and family services” or “department of social services” section.  Go to Google, or another search engine, and type in “State of [type in the state in which you reside].”  Note: adding quotation marks around your search phrase will help narrow your search.  A listing for your state’s website should be the first item on the list. Click on the link.  Next, you should see links to various state departments or a search engine to search the state website (type in “Adoption in [the state in which you reside]” in the search engine for links to adoption r...